My son's Nagalase reading was 0.67 prior to taking MAF314. 6 weeks into taking MAF314, it shot up to 3.2. Does this mean the MAF is ineffective and should be discontinued? Has it to do with the fact that he is intolerant to milk from cow, sheep and goat? MAF contains colostrum and we use goat's milk to prepare the yoghurt. Appreciate any suggestions.
Graeme- The Nagalase was tested by Redlabs, Belgium. Sushi- There is no doc in Australia who "specializes" in me/cfs. The one whom my son is seeing has an "interest" in me/cfs. The next appointment to see him is end of next month as he is away. In the meantime, I'm not sure if we should proceed with MAF314. The neighbourhood doctor said he could not interpret the results. Perhaps my son shouldn't have gone on MAF since Nagalase showed a low reading at 0.67
Caremom, have any of his symptoms improved or changed with the MAF314? I noticed benefit to my stomach and sleep within a week. Then there was a period of possible IRIS. After the first month I had better physical functioning. Didn't have my nagalase levels taken because it was experiemental and I heard conflicting reports/
ukxmrv- Glad you see some improvements after the first month on MAF314. We haven't seen any improvements having been on it for 9 weeks. On the contrary, new debilitating symptoms surface but not sure if this has something to do with the raised nagalase.
There is one doctor who does a lot of ME CFS. A low reading at 0.67?, I could be wrong but this sounds suspiciously low, you could try reducing the MAF 314?
Caremom, how disappointing! I'm sorry you haven't seen progress The original nagalase result does sound very low. I'm guessing you didn't get results there until after you'd started on MAF314. Do you know if the doctor who supplied the starter has had anyone else report this kind of result, are you able to ask her opinion? Best, Anne.
GcMAF Australia- Do you mean reducing from 125mls daily to say 80mls? Would it be beneficial to switch over to inj GcMAF instead? Anne- You are right. The results arrived well after my son started on MAF314. It was taken in Feb, despatched to Redlab at the end of April and the results came in a few days ago. I did ask the Austrian doctor who sold us the MAF and her reply was to continue taking it because some of her patients improved after 6 months. It is so confusing.
Pobably every one is different with CFS, some take a while, There is some symptons that "come back" initially as the body adjusts. This occurs for a lot of people. I am just waiting to get some info regarding the dosage
GcMAF Australia- You mentioned a doctor who does a lot of ME/CFS in Australia. Is this doctor based in Brisbane, Melbourne or another state? We used goat's milk even though he is also intolerant to it, but to a lesser extend than cow's milk. I have emailed Dr Enlander on this and awaiting reply.
Hi caremom, i have been trying to get back to you, The doctor is in Melbourne, Dr Don Lewis, he has about 25 people on GcMAF and starting about 20 on MAF 314. He looks at the intolerances before they go onto the MAFs http://www.cfsdiscovery.com.au Donvale Specialist Medical CentreSuite 8, 90 Mitcham Road, Donvale VIC 3111 (03) 9841 4500 see also http://youcommnews.com/pitches/9-cfs-sufferers-living-corpses-left-for-dead/posts/7
GcMAF Australia- Thank you for the info and the link. Very interesting read. Wonder what is the percentage of me/cfs sufferers having leaky gut. The gastroenterologist my son went to dismissed leaky gut as 'nonsense'!
Hi Mrs Caremom, hope you are well, and your son is OK. Don Lewis treated his wife and has 15+ years experienc He tests sugar intolerance 60% allergic to fructose 40% allergic to lactose Then tests 60 food antigens 99% have food intolerance 60% to casein just doing this and eliminating foods gives improvements. Don also looks at the bacteria in the gut. I think his protocol looks very good So all these food intolerences will give gut problems, immune inflammation and hence leaky gut, so looking at probbably 100% CFS people. Just looking at people on TV i reckon 80-90% (over say 40-50) have inflammation. This includes nearly all the politicians. I would recommend Dr Lewis, Plus i am starting to think that we should test our families as well Regards GcMAF
